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Feeling a bit frightened - waiting for diagnosis

Hi everyone

It has taken some courage to post on here as my symptoms are so non specific and sometimes I feel like I am going mad and if I am totally honest, I have been trying to distance myself from a Lupus diagnosis and did not want to believe having that is possible - if that makes sense.

For ages now I have been feeling really exhausted, to the point I could walk somewhere and not have the energy to walk back. I start the morning not too bad and by the end of the morning would sneak off to the toilets at work and rest my head for 10 mins

Gradually this has become worse, I wake up early hours of the morning with a weakness in my body that would make it impossible to walk, I feel as though I have had my bones removed. When I get up in the morning my ankles, knees, hands/wrists are so sore - I am taking 2 panadol/codeine in the morning as I cannot take NSAIDs and sometimes if the pain is bad - in the evening as well.

My hip hurts - as though it has dried out, the other week I noticed one side of my face was stinging to the touch and I had a mouth full of ulcers, this went away and then I got a cold sore on my lip - just get rid of one and then I get another.

Headaches - my goodness, a migraine type pain that starts with a pain/pressure above the right eye, and pain in my neck.

My head has gone 'cloudy', I am studying something I love at college (part time as I work during the day) and sometimes I can see things clearly and then its like clouds come over my head and I cannot concentrate and could stare at a computer for hours and not do any work.

Swollen eyes - I look like I have the biggest eye bags and my eyes are so dry and my vision is blurred and my mouth is dry as well. And dare I admit it - I am dry 'down below', I am 43 so thought 'Jesus Christ, this is the menopause', mind you the menopause is a normal healthy part of life but I still dont look forward to it - especially the dry part and now I have it anyway and it isnt menopause .

Dizziness, last year I got out of bed and felt as though someone had spun my world around and I fell on the floor, doctor couldnt find what was wrong and prescribed anti sickness tablets which didnt help and I periodically have the room spin round on me even now.

Emotional, I cant seem to cope with stuff I would normally cope with, when my Dad went back to the UK after a visit, I was ill for days afterwards - I dont know why. Earlier this year I was giving first aid on the scene of a car crash and I had a punching pain in my sternum, I thought I was having a heart attack, I wasnt panicking or anything but the pain was dreadful and I periodically get it now. I had to stop going to the gym as when I did strenuous exercise I would get chest pain and my heart would become irregular.

Sometimes when I breath in I get pain as well and it isnt my asthma, but its not often enough to see a doctor.

Strange vibrating in my feet, I feel like the floor is vibrating - but that could all be in my head I suppose.

Reactions - whenever I get bitten by a mozzie, I react terribly - my joints swell up and I become ill, I was bitten by a redback on Saturday and felt dreadful, my leg is now so bruised I look like I have been kicked - I bruise so easily.

Just before my period the symptoms are magnified and I feel awful. Although I have never been a sunworshipper - I am very pale skinned and have to take vitamin D supplements as I am low with those levels, I have to swim in a rash vest, hat and sunnies and have used total sunblock since moving to Australia from the UK but still, I feel awful in the sun, I cannot go out without my sunnies and my aches are even worse - why is that? I thought cold weather made joints worse not hot weather.

I know these symptoms do not make sense, I dont blame you for thinking that but I feel like my body doesnt want me anymore, that it doesnt like me - in fact I am crying just writing this down

Anyway, I went back for my blood results, expecting a thyroid problem and my GP has pointed out the following:

The GP referred me to an Immunologist - the next urgent referral (private) is for first week in July and I am also on the waiting list for another specialist who has an appointment for June so I can choose which one I want to see.

The waiting is so hard, I thought it was in my head but my GP said it isnt as there is clearly something going on.

Did any of you feel this frustrated waiting to see someone? I am also in turmoil as I have heard that one of the specialists I am down to see is very bossy and patronising and with my current mood swings, I am not sure how good I would be in dealing with that.

If any of you know of good specialists in the Perth area, could you let me know - I wouldnt mind knowing if anyone knows of either consultant that I am due to see, I dont want to post their names on here.

Apologies for the garbled post, my head has gone cloudy again.

You know, my husband was nearly killed in a car crash just under 2 years ago and I had PTSD just after, got some therapy and have come such a long way, my life is good right now and I am in a good space mentally and just as things were going my way, I now have this - life can be like that I guess.

Anyway, thank you for reading this - it probably sounded daft, it does to me. I guess I just have to choose which consultant to see and hope I can wait until either June or July.

Welcome to WHL. Try to not be afraid. If it helps, know that you are not alone. We have many people here who are still in the process of getting a diagnosis. To me, your symptoms definitely make sense, because so many of them remind me of me. I was diagnosed with Systemic Lupus in 2004. The extreme fatigue, extreme sun sensitivity, the hip/joint pain, and the "Cloudy Head", we call that Brain Fog. I have all of those when I have a Lupus Flare.

Your symptoms do sound like Lupus, but as Steve said, there are a bunch of autoimmune disorders, so narrowing it down may take some time. And I agree with him that a Rheumotologist is the specialist you should seek, as they generally are the one who is qualified to make a Lupus diagnosis (or rule Lupus out). We have a pretty large body of knowledge here, so lets see what some of our other members make of your symptoms and test results. Please make yourself at home!

I have appointments with two immunologists - one for July and one for June as I am on a cancellation list for the one in July, I will name him just in case you have heard from him, his name is Dr ******at Charlies Hospital and the other is Dr **8***? I will have to cancel one appointment obviously, just trying to decide which one to go for.

I had a good read on this site about how long people can wait for a diagnosis, that is a bit daunting I must admit but I guess at least my GP picked up on the blood results straight away and got the ball rolling, which is something.

Welcome to WHL. Try to not be afraid. If it helps, know that you are not alone. We have many people here who are still in the process of getting a diagnosis. To me, your symptoms definitely make sense, because so many of them remind me of me. I was diagnosed with Systemic Lupus in 2004. The extreme fatigue, extreme sun sensitivity, the hip/joint pain, and the "Cloudy Head", we call that Brain Fog. I have all of those when I have a Lupus Flare.

Your symptoms do sound like Lupus, but as Steve said, there are a bunch of autoimmune disorders, so narrowing it down may take some time. And I agree with him that a Rheumotologist is the specialist you should seek, as they generally are the one who is qualified to make a Lupus diagnosis (or rule Lupus out). We have a pretty large body of knowledge here, so lets see what some of our other members make of your symptoms and test results. Please make yourself at home!

Rob

Hi Rob

One of the doctors does Rheum and Immunology, not sure about the other one but the GP said immunologist - oh well, I shall see what I can find out on both specialists.

Brain fog! I like the explanation, I likened it to walking through clouds - I am trying to study at the moment and cannot concentrate for long periods and usually find myself back on this site looking for answers.

In one way I want a diagnosis so I can move on, which I cannot do at the moment as I am quite scared with these symptoms. I am wondering what other tests will be done once I see someone, I have been given the results from the GP but he said they may want to do more.

I am hoping because I dont have one of those rashes on my face it might not be Lupus (I say hopefully)

I have appointments with two immunologists - one for July and one for June as I am on a cancellation list for the one in July, I will name him just in case you have heard from him, his name is Dr Mallon at Charlies Hospital and the other is Dr Zilko? I will have to cancel one appointment obviously, just trying to decide which one to go for.

I had a good read on this site about how long people can wait for a diagnosis, that is a bit daunting I must admit but I guess at least my GP picked up on the blood results straight away and got the ball rolling, which is something.

Thanks again for the info.

I don't know the names, as I live kinda far away-on the other side of the world! We have quite a few Australian members here, so hopefully somebody can help with the names.

Waiting for a diagnosis is indeed daunting, and you will probably experience a strange sense of relief once you do get a proper diagnosis, I know I did. The not knowing was worse than just finally having an answer. And, once you have a diagnosis, you can then pursue a course of treatment. There's comfort to be had from that, both physically, and psychologically.

If you want to do more reading, you'll find articles at the top of each front page of the forum that are called "stickys". Check them out-there's a wealth of good info in these articles, and you might find another clue that gets you closer to the answers you need.

Rob

ETA-It does sound like one specialist is indeed a Rheumo, so you should be good to go. Yeah, Brainfog is our nickname for the condition known as Cognitive Dysfunction. Rather catchy, don't you think?

Wecome to WHL Corella. You must have had a hard time this summer being so long. At least now we have some cooler weather coming our way, and with the prospect of less sunlight, hopefully you will have less sun light to deal with.

YOu mentioned that you are studying and are having some problems. My bit of advice is, just to help you get through the last few weeks of study before revising for your exams ....
1. Set a goal, and study (set the alarm for 60 minutes)
2. Check out WHL for 20 minutes (set an alarm for 20 minutes)
3. Take a break, get a drink or a snack (set the alarm for 10 minutes)
4. Get back to the study (set the alarm for 60 minutes)

5. Check out WHL for 20 minutes (set an alarm for 20 minutes)
6. Take a break, get a drink or a snack (set the alarm for 10 minutes)
7. Get back to the study (set the alarm for 60 minutes)

You get the idea? That way you can study for 1 hour, then have a 30 minute break. You will achieve more things that way, instead of thinking about what is wrong with you and stressing out during this crucial time of your study calendar. This will allow you only 20 minutes to worry, the reast of the time you need to be productive and get on with the things you really need to do.

It is really important not to let the fact that you are sick, or the worry of being sick take over your life. YOU still need to do the normal things you need to do. You are in control of your life, do not make your sickness control your life. Life is too precious!

It has taken some courage to post on here as my symptoms are so non specific and sometimes I feel like I am going mad and if I am totally honest, I have been trying to distance myself from a Lupus diagnosis and did not want to believe having that is possible - if that makes sense.

For ages now I have been feeling really exhausted, to the point I could walk somewhere and not have the energy to walk back. I start the morning not too bad and by the end of the morning would sneak off to the toilets at work and rest my head for 10 mins

Gradually this has become worse, I wake up early hours of the morning with a weakness in my body that would make it impossible to walk, I feel as though I have had my bones removed. When I get up in the morning my ankles, knees, hands/wrists are so sore - I am taking 2 panadol/codeine in the morning as I cannot take NSAIDs and sometimes if the pain is bad - in the evening as well.

My hip hurts - as though it has dried out, the other week I noticed one side of my face was stinging to the touch and I had a mouth full of ulcers, this went away and then I got a cold sore on my lip - just get rid of one and then I get another.

Headaches - my goodness, a migraine type pain that starts with a pain/pressure above the right eye, and pain in my neck.

My head has gone 'cloudy', I am studying something I love at college (part time as I work during the day) and sometimes I can see things clearly and then its like clouds come over my head and I cannot concentrate and could stare at a computer for hours and not do any work.

Swollen eyes - I look like I have the biggest eye bags and my eyes are so dry and my vision is blurred and my mouth is dry as well. And dare I admit it - I am dry 'down below', I am 43 so thought 'Jesus Christ, this is the menopause', mind you the menopause is a normal healthy part of life but I still dont look forward to it - especially the dry part and now I have it anyway and it isnt menopause .

Dizziness, last year I got out of bed and felt as though someone had spun my world around and I fell on the floor, doctor couldnt find what was wrong and prescribed anti sickness tablets which didnt help and I periodically have the room spin round on me even now.

Emotional, I cant seem to cope with stuff I would normally cope with, when my Dad went back to the UK after a visit, I was ill for days afterwards - I dont know why. Earlier this year I was giving first aid on the scene of a car crash and I had a punching pain in my sternum, I thought I was having a heart attack, I wasnt panicking or anything but the pain was dreadful and I periodically get it now. I had to stop going to the gym as when I did strenuous exercise I would get chest pain and my heart would become irregular.

Sometimes when I breath in I get pain as well and it isnt my asthma, but its not often enough to see a doctor.

Strange vibrating in my feet, I feel like the floor is vibrating - but that could all be in my head I suppose.

Reactions - whenever I get bitten by a mozzie, I react terribly - my joints swell up and I become ill, I was bitten by a redback on Saturday and felt dreadful, my leg is now so bruised I look like I have been kicked - I bruise so easily.

Just before my period the symptoms are magnified and I feel awful. Although I have never been a sunworshipper - I am very pale skinned and have to take vitamin D supplements as I am low with those levels, I have to swim in a rash vest, hat and sunnies and have used total sunblock since moving to Australia from the UK but still, I feel awful in the sun, I cannot go out without my sunnies and my aches are even worse - why is that? I thought cold weather made joints worse not hot weather.

I know these symptoms do not make sense, I dont blame you for thinking that but I feel like my body doesnt want me anymore, that it doesnt like me - in fact I am crying just writing this down

Anyway, I went back for my blood results, expecting a thyroid problem and my GP has pointed out the following:

The GP referred me to an Immunologist - the next urgent referral (private) is for first week in July and I am also on the waiting list for another specialist who has an appointment for June so I can choose which one I want to see.

The waiting is so hard, I thought it was in my head but my GP said it isnt as there is clearly something going on.

Did any of you feel this frustrated waiting to see someone? I am also in turmoil as I have heard that one of the specialists I am down to see is very bossy and patronising and with my current mood swings, I am not sure how good I would be in dealing with that.

If any of you know of good specialists in the Perth area, could you let me know - I wouldnt mind knowing if anyone knows of either consultant that I am due to see, I dont want to post their names on here.

Apologies for the garbled post, my head has gone cloudy again.

You know, my husband was nearly killed in a car crash just under 2 years ago and I had PTSD just after, got some therapy and have come such a long way, my life is good right now and I am in a good space mentally and just as things were going my way, I now have this - life can be like that I guess.

Anyway, thank you for reading this - it probably sounded daft, it does to me. I guess I just have to choose which consultant to see and hope I can wait until either June or July.

Hi Corella,

Welcome to our lovely large family of the WHL and it's lovely to have you with us and by letting it out and crying at the same time it's taking pressure and depression out your system and you definitely don't sound daft, that's what we're all here for to support one another.

I've had to do a quote on what you've said because my brains foggy this morning plus hip pain and swollen joints and i'm 43 your age but i was born with Lupus had ailments for 25yrs and it's only been the last 3yrs i was diagnosed it only took a few more blood tests.

You need to see a good rheumo and get your bloods tested furthur but if you do have Lupus or any autoimmune diseases which can lap one another, always remember this Lupus can make the bloods fluctuate where you may have something but the reading could say negative it's terrible for playing with the blood system.

Everything you've mentioned i have more or less and it's terrible to suffer but keep yourself out the sun and wear 50 block as the sun can bring out bad flares to the skin and you really suffer for it afterwards, try to keep to the shade and things you do in life learn to pace out, i've had to do it, it's flustrating after knowing what you could do but it's the only way of helping your body.

With your ANA coming in positive there's some underlining and i wish the best with getting a descent specialist and as for waiting a good many member's have excellent Rheumo's, mines not that good and i have to wait up to 6mths at a time before i see him, so if i'm ill in the meantime and need help bad the sister who works with him deals with me. So i do wish you all the best and when your upset get on here and vent away, as there's always somone to answer you in due cause.

One thing that makes me question why I dont have a facial rash and that is since I moved to Perth 3 years ago I have used total sunblock and stayed out of the sun but perhaps that is just my imagination and I dont have it as yet. But my aches/symptoms are awful in the hot weather, to the point I feel sick.

Im confused as to why my GP referred me to an immunologist although I think but am not sure, this doctor works in both areas - I will need to check.

I am in many ways, not looking forward to meeting him in case I have to fight for a diagnosis or wait years for one

And I might add that this evening while one moment I was sitting down comfortably, my aches and pains have just now started yet again and I am feeling quite 'old'. I do wonder what effect it will have on my marriage and that sounds daft but I feel sorry for my husband having to put up with this.

And yet again, my 'head clouds' have started and my sentences are not making sense.